Abemaciclib Verzenio for Stage IV
Comments
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any educated guesses as to if curcumin might interfere or interact with abemaciclib? what about metformin? (not taking either but considering both. there used to be something about metformin in the physicians' insert but i can't find it now.) thanks!
Curcumin also affects the way the liver uses two detoxifying enzymes called CYP1A2 and CYP2A6. It inhibits the action of the first enzyme but enhances the action of the second.
This basically means that curcumin potentially interacts with the same prescription drugs as grapefruit juice.
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My wife is using both letrozole / ibrance and metformin, and getting good results from the letrozole / ibrance.
According to one researcher, Constantine Kanaklidis, there is no clinically significant interference between curcumin and letrozole, despite the theoretical overlap of cytochrome enzymes. It's not as strong an inhibitor as say grapefruit. Now that statement may only apply to ordinary curcumin, and not a preparation that dramatically increases the concentration of curcumin in the bloodstream, such as nanoparticle curcumin, liposomal curcumin, colloidal curcumin, etc.
That said, if I were going to use curcumin, I would opt for a potent version, such as liposomal, nanoparticle, etc, such a theracurmin in order to ensure that it is actually absorbed into the blood stream. As it produces much higher concentration of curcumin in the blood (60x). However, I personally wouldn't feel comfortable in jeopardizing the effectiveness of ibrance for not enough promise of reward. Despite the reassurances of Constantine Kanaklidis, the fact that curcumin, letrozole and ibrance all use cyp3A enzymes, just wouldn't leave me feeling comfortable. I don't see the strong enough evidence of the effectiveness of curcumin against cancer to jeopardize a treatment that does work.
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husband 11: thanks for your great reply! it dovetails with my thoughts about curcumin: while nothing but the most-effective preparation would be worth taking (by the way, a baby aspirin is supposed to boost curcumin availability also), it may not be worth risking. the reason why i considered it is because i do seem to suffer from inflammation, as evidenced by a number of symptoms, not so much because of curcumin's anti-cancer effect. it didn't prevent my recurrence, so it's unlikely to help fight my very advanced and extensive cancer now.
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Reporting in after week finishing week two. So far, so good. I haven't had the diarrhea side effect at all. I do experience slight stomach discomfort from time to time. It's nothing that is not bearable. I've been on other therapies that are far worse. I won't get scans again until April. Just had bloodwork and my WBC is slightly off but only a few points off the norm. I asked the onco about time it take for response and she said there wasn't any data on that. Is anyone aware of any data that speaks to this?
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For CDK 4/6 inhibitors as a class it takes up to 3 months to see a response and they can keep driving the cancer back for 12-18 months. Its a slow process. Not like chemo. This is the data for Ibrance and Ribociclib/kisquali. There is no practical reason why abemaciclib should be different or why your onc should be so cagey. But they are like that.
>Z<
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all right. i have been taking abemaciclib for three weeks now (monotherapy, 200mg) and side effects kicked in after first week and are horrific and haven't abated: i have watery diarrhea 100% of the time. unable to leave the house. painful cramps, too. extreme fatigue. have been taking electrolytes (of my own making) but not imodium since i have had no one to go to the pharmacy and pick it up for me.
any advice? did the diarrhea stop for anyone after, say, the first month? that's what some of the studies reported. i could reduce the dose but would of course like the best possible chance of the best possible effect.
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lifting from constantine's comments ... "diarrhea incidence is concentrated during the first month, and more narrowly the MTO (median time to onset) of the first diarrhea event was 6 days, lasting a median duration of just 6 days for Grade 3 diarrhea." sounds like you have grade 4 diarrhea so median duration is going to be longer, probably. but it does end.
however, dropping down the dose to reduce the side effects, at least for a period, may not reduce efficacy. they establish the doses of the drugs based on maximum tolerated dose, not efficacy, believe it or not. efficacy does not necessarily increase with dose. IMO we're getting doses that are too high much of the time and side effects have a real and negative effect on outcomes.
i'm concerned.
>Z<
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zarovka: yes, thanks for the reminder about dosage. good point. i knew that about tamoxifen. i had asked for a reduced dose a week ago but my oncologist's office forgot to put the order in, apparently. i re-requested today and am expecting it by thursday. i'll drop the dose down to 150 mg, at least for a while.
yes, grade 4, and for 13 days so far. how much longer does grade 4 take to resolve, do you think? i am feeling like i am dying. thing is, that might actually be because i am actually dying, and not from abemaciclib. my lung symptoms are getting worse and worse.
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Luce - Piggybacking onto Z's info, below is a specific recommendation about diarrhea treatment while on abemaciclib from a post by Constantine (user name Edgerider on Inspire.com.) Sorry, I'm on my phone and can't link directly right now.
I would urge you to get Imodium immediately to control the symptoms. Constantine says it is manageable and I am worried that the diarrhea is weakening you. Could a pharmacy near you possibly deliver? Please do not wait for this to go away on its own. There is no reason for you to be in such misery. We all want to see you strong so that abemaciclib has a chance to work for you.
Moissy
Below is directly quoted from his post:
An aggressive proactive regimen of:
- high-dose loperamide/Imodium (4 mg but NOT ever de-escalated down to 2mg (and up to 16 -32 mg daily);
- "Big Pink" (Petpto Bismol Extra Strength) used in "priming" mode (started on day 4 and also used for immediate relief during loperamide dosing;
- budesonide (Symbicort) for recalcitrant cases;
PLUS "adjunct interventions:
- high-dose probiotic (28 billion microorganism count in two divided doses), and
- electrolyte powder (most of the refractory diarrhea was analyzed to be secondary to disturbed microflora and electrolyte imbalances)
- at least 12 8 oz glasses of fluid daily, 8 of which should be electrolyte-enhanced
brought the rate of diarrhea-related drug omission or dose reduction down from 22% (MONARCH 1 and 2) to under 1 - 2% in the cohorts run by my research teams in India and the Middle East.
NOTE: We found that the adjunct interventions of Big Pink, high-dose probiotic, electrolyte rebalancing, and assured fluid intake were at least important as the conventional agents, and in cases that seem intractable, converted to success, given that therapy-driven diarrhea inevitably causes GI tract flora, and electrolyte, imbalances, aggravated by inadequate hydration. Also critical was "through-and-through" loperamide dosing: 4 mg at each episode, but NOT de-escalating - as current protocols do - down to 2 mg after first (that de-escalation regimen we found indifferently effective, with large numbers of failures.
And although not reported to date, I note that in the MONARCH 3 trials the incidence of ANY grade diarrhea dropped to just 2% (courtesy of data provided by Levi Garraway at Lilly).0 -
oh luce. sending waves of strength.
i am concerned also that you can't get immodium. it suggests a lack of a support network that is not going to work even medium term. i hope you can figure out how to get support during periods when you are really beaten up. this advice is coming from the person who did not ask for assistance transferring gates at DFW when I had a high fever and could barely walk. i am not prepared to own that I need help, myself. but as an outside observer, i can say that you need immodium and you will need other things until this diarrhea lightens up. there are angel groups and all kinds of horribly kind people ready to help. your doctor can connect you with the groups that do this.
when i am in pain or symptomatic in any way, i can't keep the dark thoughts away. a little hair loss, and I am blubbering pile of tears. in fact the dark thoughts haven't correlated with outcomes, just with pain and symptoms. i do know how you feel. when do we stop trying to optimize and just let go? NOT YET. get some sleep and call a cancer support group in the AM, please.
>Z<
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moissy and zarovka:
thanks for caring and advice!
well, i am single since my boyfriend broke up with my a month ago, and the three friends who usually help me all happen to be on vacation this week. another friend just brought me the immodium but he had been out of town until now. just bad timing; i usually have some support. and, yes, i also have a hard time asking for help, or accepting it, in general.
(while diarrhea is annoying and weakening, my main problem IS in my lungs; my oxygen saturation keeps dropping even on supplemental oxygen. i get out of breath standing still at this point. i actually think i am not thinking catastrophically at all but rather too much in denial still. i am pretty sure my oncologists think i only have weeks, if that. i am just too chicken to ask. but they approved my death-with-dignity drugs months ago. you can only get those if your prognosis is less than 6 months.)
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stay in the moment. focus on doing the best you can to care for yourself. it really doesn't matter what anyone thinks. nobody knows.
with you ...
>Z<
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Luce - I hope you will start to feel better soon.
This site has many personal stories of women being told they had such and such an amount of time to live only to live many years longer. I truly believe that if your doctor did not think this treatment had a chance of helping you, he or she wouldn't have prescribed it.
I'm sorry about your boyfriend. That alone must be really hard. With this disease, all of us have had dark moments when we project negatively into the future. But when a treatment starts WORKING, it is possible to regain hope that you may not feel right now.
Hugs to you.
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Z- Hope you are feeling better as well after your harrowing airport excursion and new treatments.
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God bless you Luce! I pray the Imodium helps. Z and Moissy - you are angels. Blessings to you both. Thank you for sharing the info Z
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reporting on imodium: took a total of 8 mg today and so far, no diarrhea (but i sometimes skip a day and have no bowel movements at all, simply because i am too empty, i think) but i can barely stay awake! i had to take a 3-hour nap shortly after taking the first 4 mgs. and i have had heavy eyes all day. this is really unpleasant, as i was hoping to be less fatigued with less diarrhea. profound fatigue is one of the symptoms of dying, so feeling this tired and weak is really disconcerting to me at this point, and not an acceptable side effect (if caused by imodium). i am almost certain imodium, an opioid, is the reason, though.
therefore, i think an abemaciclib dose-reduction (to 150 mg; i take it as monotherapy, so am on 200mg) makes sense for me. hopefully, the diarrhea will subside on a lower dose. also, i have had mild but persistent nausea on abemaciclib, and i don't like it. i am already skinny, and nausea goes hand in hand with inappetence. more nausea and even less appetite today, so i am suspecting imodium contributes to that.
anyone else got that tired from imodium? did anyone tolerate abemaciclib much better after a dose reduction?
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Hi Luce- Late to the discussion, but you may be wiped out from all of the GI problems alone, let alone the difficulty breathing and all the stress.
Can you let us know the treatments you have already had for MBC, and what response and SEs you had from them?
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Hi Luce. Have you tried any breathing techniques to get your stress level down? GI issues really escalate my stress level and breathing. The easiest technique I use is to breath in to a count of 6, then exhale for 8 to try to breath fully and slow down my breathing which helps my stress. I do it lying down or sitting for several minutes. I also concentrate on bringing in good air and expelling any toxins. I’m guessing you fatigue may be from the drugs, not being able to eat stressand being dehydrated.
I hope tomorrow is a better day for you.
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Liwi: Thanks for your kind suggestion. I am familiar with that breathing technique (and many more: I happen to be a certified yoga instructor) but my symptoms are not due to stress. And, sadly, breathing exercises and -meditations don't work for me anymore: I have extensive tumor growths obstructing my lung parenchyma.
Cure-ious: No other standard-of-care therapies apart from abemaciclib. For quality-of-life reasons, I am neither interested in chemo- nor endocrine therapy.
I feel this increased fatigue is distinctly linked to Imodium, so was wondering if anyone had experienced that also. I guess it is too early to ask if anyone has had a response to reduced-dose abemaciclib!
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Luce,
So happy to hear that you got the immodium! It makes me very tired too. If I take the full dose, I get the "can't move my limbs" kind of tired. Not sleepy, just exhausted.
Keep the fluids coming. Have you done a pinch test on your skin to make sure you aren't dehydrated? I'm sure you know it: you pinch the thin skin on the back of your hand, and if the skin retains the fold, get some fluids in you.
Jennifer
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blainejennifer: thanks for sharing your experience with imodium and fatigue! i knew it wasn't just me: apparently, it is a well-known side-effect amongst people with irritable bowel syndrome who take immodium. i, too, find it almost impossible to move: i have to psych myself up just to stand up, and i can't even sit up straight on this stuff. and in me, it definitely causes sleepiness and heavy eyelids.
yep, i have been pinching myself and am not excessively dehydrated. i have been very good about electrolye and fluid intake.
this fatigue is different from diarrhea fatigue: it feels spacy and drug-induced. i must be rather sensitive to the opiod effect of imodium. i mean, why wouldn't it affect some people strongly even if it "mostly stays in the gut"?--there is the very strong gut-brain connection via the vagus nerve, etc.
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here's what my oncologist replied regarding dose-reduction and efficacy:
Doses are initially found in early trials based on tolerability, but historically that has correlated with efficacy. For some of the new drugs we are finding efficacy at lower doses, whether equivalent or not to full dose is unknown for most. Palbociclib has it seems similar efficacy at lower doses but that was in patients who started high dose and required reductions
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so, on imodium, i can barely eat. i have zero appetite today and increased nausea. also, i haven't had a bowel movement in the two days i have taken it, and i DID (against constantine's advice) taper down to 2mg after the initial dose because i anticipated constipation. in fact, i only had 2mg of imodium today, because i could only get myself to eat once. while OF COURSE, those symptoms--nausea, inappetence--could be and have been symptoms of my condition or side effects from abemaciclib (which also makes me nauseous), all have been so much more pronounced since imodium, so i strongly suspect that. this is becoming one of those solution-worse-than-problem situations. i really hope i can tolerate abemaciclib at the reduced dose (expecting delivery tomorrow), because throwing more medications at the problem is not working for me.
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luce - remember that the diarrhea doesn't persist, generally. it's a matter of getting through it.
hugs and support. this is very tough.
>Z<
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MostCapable - Thanks for the update! It’s great hearing front line experience on this protocol since it’s so new.
Luce - Glad to hear the D has subsided & your reduced dose is on the way. Hope that you will find the right combo that minimizes side effects
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Luce I hope your side effects start diminishing soon. Also that the Abemaciclib works for you. Sorry you are going through this difficult time.
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Luce - I know you don’t want to throw more drugs into the mix but zophran has been very helpful for me when I get nausea. Just a thought. Also I have had to use Imodium recently but I did not feel tired from it. I only needed it a couple times so that’s not much to go on I guess.
Hope you feel better.
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Luce, I had no idea Imodium was in the opiod family. I googled it after reading your post. Disturbing!!!
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I've just barely caught up with reading this thread since I was last online. It is midnight (I know it's way to late to still be up but since getting bone mets my ability to sleep has gone out the window.) Sorry y'all but I don't know how to take the bold font off.
I start my second 28 day cycle of verzenio tomorrow. I have been back at work for two weeks and other than fatigue and nausea (which is easily controlled) I think I am doing great. I sat at home for two weeks waiting to get the side effects that I had read about verzenio and other than one short bout of diarrea I am good.
My problem other than not sleeping well is the dry skin. I have always had horriibly dry skin but now it is ridiculous. I haven't found a solution yet.
I'm going to sleep now but hope to join in the discussion tomorrow. I want to tell you all my adventures of the first 28 day cycle of this drug.
Love, Jenny
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Welcome spicedlife - We want to hear everything!
>Z<
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